Simon Baron-Cohen speaks out on lack of support for adults

The Director of the Autism Research Centre in Cambridge, Simon Baron-Cohen, has spoken out about the "patchy" services for adults with autism and the lack of progress in implementing the Autism Act's adult strategy across the country.

Speaking to Cambridge News following an NAS 'in conversation' event with John Bercow MP, Baron-Cohen said:

“The Autism Act in 2009 was a cause of celebration, because at last people with autism – especially adults who had been under the radar for services and support – were finally being discussed by the House of Commons."

He added: “All the Autism Act did was to call on the Department of Health to implement an autism strategy. That was fine, although it left the details to be worked out.

“In 2010, the DH published the Autism Strategy and on paper it looked good. But good intentions – to ensure rapid access to diagnosis, and a quick route to the clinical pathway of receiving life-long post-diagnosis support – need extra spending, and even penalties on those regions that are not delivering an excellent service.

“Regretfully, in too many parts of the country, services are still very patchy.”

Why Emma is pushing for action

Emma, who has a sibling with autism, came to our Push for Action reception in parliament in October. Here, she writes about her experiences of the event and why she is supporting the campaign:

On the 15^th October I had the fantastic opportunity of supporting the National Autistic Society in their ‘Push for Action’ campaign in Parliament. As my severely autistic brother has gone through a traumatic experience from children’s  to adult services, I  like many others across the country,  understand the urgency to improve local services for adults with autism. 

The parliamentary reception began with speeches from other campaigners. I was really inspired by the enlightenment of Chris, an adult with autism, sharing his experience of what it is like living with autism.  This was followed by Sam and her brother, Indi, who made an emotional speech of what they have gone through and what needs to be changed. It was great to see so much support in the room from campaigners and members of parliament from all over the country. 

Once the speeches had finished, everyone began circulating the room. I shared my brother’s story of how social services failed him and he ended up being sectioned as he had nowhere else to go. I was surprised by how little some members of parliament knew about autism so it was important to help them understand the importance of implementing the Autism Act that was passed in 2009. 70% of adults with autism do not receive the support they need from social services. The main aims of Push for Action include: Department of Health providing an innovation fund for new projects;   include autism training in the core training curricula for doctors, nurses and other clinicians; review the training for frontline job centre staff in autism; and adjust the standard equality classifications to include new autism classifications. If these were implemented in each area, a lot of people who are affected by autism would suffer less. I also explained my thoughts on the need to educate schools about autism, as children are our next generation who will in turn be our Members of Parliament, doctors and social workers. I have certainly found that unless people are affected by autism, they know very little about it. Helping people understand autism would help in accepting them into our society and prevent them being an ‘outcast’. 

Over the years, minorities that have undergone discrimination - such as racism, sexism, homophobia - which are gradually becoming the norm in our society and I hope the stigma around autism and learning disabilities will change for the better in the future.  I met a couple of other siblings of autistic people who were as passionate as I am about changing services for the better. It was interesting hearing their stories and ideas, which were similar even though we were all from different parts of the country with siblings on different ends of the spectrum. I have begun raising the profile for this campaign amongst my peers and staff at school and plan to help them understand autism better.

Overall it was an enlightening and humbling experience which has encouraged me to support the campaign and put an end to autism not getting the priority it deserves.

Get involved by signing up to the campaign at: www.autism.org.uk/push

Signs of progress in parliament?

This week has seen some encouraging responses from the Minister for Care Services, Norman Lamb, in parliament this week.

MPs, inspired by the local action of Push for Action campaigners or by the people with autism and families they heard from in parliament at our reception, have been tabling written questions to probe on some of our key campaign recommendations.

In response to a question from Joan Walley, MP for Stoke-on-Trent North, about how the Government are "ensuring clinical commissioning groups are aware of their obligations under the statutory guidance that accompanies the adult autism strategy", Mr Lamb confirmed the forthcoming publication of new guidance for Clinical Commissioning Groups (CCGs) which we have long been calling for:

"The Joint Commissioning Panel, supported by the Department, is due to publish shortly a practical guide for CCG, to support health professionals implementing relevant aspects of the Adult Autism Strategy guidance, and the National Institute for Health and Care Excellence guidelines on Diagnostic Services."

Steve Brine, MP for Winchester, asked if the Minister will "will introduce outcomes for adults with autism into the health and social care outcomes frameworks" reflecting one of our Push for Action priorities that autism is 'mainstreamed' into broader health and social care reforms. 

Because the outcomes frameworks referred to here are dependent on good data being collected on autism, the best we will be able to get out of the Government at this stage is a commitment that it will be brought in once the new data collection policy comes into play, so Mr Lamb's response that:

"We are considering how we can include a new measure on autism in the 2015-16 Adult Social Care Outcomes Framework"

is much more useful than it might appear at first glance.

Potentially most encouraging of all, was an answer to Heywood and Middleton MP, Jim Dobbin. Mr Dobbin asked the Minister "what financial support his Department makes available to local authorities to develop and share learning from innovative autism services". In response, for the first time ever on record, Norman Lamb made reference to the funding ask in our Push for Action report and said it was something they were considering:

"The National Autistic Society have proposed that there should be an innovation fund and we will consider this during the current review of the 2010 Adult Autism Strategy, which will be completed by the end of March 2014."

Asking for money in this financial climate was always going to be a tall order, and we are still a long way from achieving it, but this answer provides some real hope that it might be an outcome we can achieve if we keep on pushing together.

You can read the full transcript of these questions and answers, here:

http://www.publications.parliament.uk/pa/cm201314/cmhansrd/cm131106/text/131106w0003.htm#13110691000689

"Being high functioning can feel like climbing high above the imprisoning walls of autism, only to see what you can’t quite have."

At our Push for Action reception in parliament earlier this month, we heard from two people affected by autism. Sam spoke about the challenges she had faced trying to get adequate support for her brother, Indi. Chris then told us about his own experiences, pre- and post-diagnosis. Read his incredible story, beautifully told, below:

"My name is Christopher Goodchild and I have an autistic spectrum condition. 

"I might look quite ‘normal’ to you but it has taken me many years to acquire the skills I have now. My adapted skills were acquired through necessity and refined through adversity – a matter of sheer survival.

"Imagine being able to see, feel, taste and touch the world around you with such intensity and longing, and yet for the most part, this very world remaining beyond your grasp. Like being in the desert and led to a well that you cannot quite drink from.

"Being high functioning within the spectrum can feel like climbing high above the imprisoning walls of autism, only to see what you can’t quite have and most others take for granted. The truth can be so humbling when it’s just beyond your reach. Depression was for me an inevitable consequence of aching to be part of this world that has forever been an enigma to me. I spent my childhood feeling misunderstood by my family, teachers, and doctors. School was meaningless to me – I was labelled as having learning difficulties and was isolated from the rest of the class. Like many people on the autistic spectrum I process information in a very different way to the average person. 

"I was institutionalised as a teenager because I was severely ill with depression. Being told daily I was odd, abnormal, and weird or just plain mad. High-functioning autism (HFA) was not common knowledge then.

"Self-harming, cutting my arms, was my way of putting on the outside what I felt on the inside, externalising the inner torment of not being seen and understood. The cost of concealing my inner world so convincingly as to appear so ‘normal’ was always paid for with depression. I experienced great loneliness and extreme anxiety and was constantly confused and overwhelmed. I was crushed by the cloud of unknowing why I was the way I was, I could not move forward until I knew what held me back.  When I was finally diagnosed with ASD in 2007 it was like being given a pair of gloves and being told, “Here, I think you will find these are a perfect fit” – and they were. This was a turning point in my life, whereby for the first time I was able to handle myself with care, living more creatively within my limitations and more abundantly through my gifts.

"The NAS supported me in finding a private evaluation for HFA, as there were limited options available for me, and also provided me with options for post-diagnosis support. Diagnosis was not a label; it was a moment of enlightenment. It gave me my dignity and the chance to live a more dignified life. It saved my life. The facts are kind. The denial of the facts can be very unkind indeed.

"My first book, ‘A PainfulGift – The Journey of a Soul with Autism’ published within two years of my diagnosis, outlines my life and explores how autism through being a hidden disability, can so easily render us invisible  people. We can become invisible people because our presence is ignored and our behaviour misunderstood.

"My role as Ambassador for the NAS is to help raise awareness of this on-going struggle, alongside the enormous gifts and insights that we on the autistic spectrum can offer the world. Autism is not just about suffering; it’s about being alive in an extraordinary way and is as much part of humanity as the capacity to dream.  Autism is about having a pure heart and finding a way to engage with this heart within a world that often seems so cold and distant.

"Whilst I may have found grace through suffering, many with autism and their families have been crushed by it. It is for this reason that I am here before you today and that all my writing is dedicated to those with autism and those who are less fortunate than myself."

Catch up with Jenson's travels

'Jenson', our traveling button, has been rather busy these last couple of weeks, meeting campaigners and raising awareness of the need for better support for adults with autism. 

If you haven't been following his adventures on Twitter @NASButton, you might want to catch up here on our specially crafted Storify page.

Enjoy!

The view from Barrow-in-Furness

Mike Stanton is an NAS councilor and lives in Barrow, Cumbria. Our 'traveling button', Jenson, came to visit his local branch, which prompted him to offered his thoughts on the campaign in his blog.

Read what he had to say, below:

The National Autistic Society has been running an unusual campaign, Push for Action, that is probably one of it’s most successful in terms of participation and outcomes. That is not what makes it unusual. The NAS has a track record of successfully running campaigns that impact upon public policy regarding autism. Its most high-profile success to date was the campaign to get the Autism Act onto the statute books. This Act specifically tasks relevant government departments, along with local health and social services with identifying the needs of autistic adults and taking steps to meet those needs. Unfortunately, implementation of the Act has taken place in the context of the severest cut back in public spending ever that flowed from the financial meltdown of 2008 and the subsequent years of economic recession.

Which brings us back to Push for Action. The most important component of the Autism Act was an obligation on government to develop a coherent strategy for supporting adults with autism. That strategy is up for review next year. It is not perfect but the fear is that the government will use the economic crisis as an excuse to lower expectations and further weaken the provisions of the strategy. Push for Action is a response to that. What makes it unusual is that, instead of targeting senior politicians and civil servants in central government the campaign has been deliberately local. The success of the Adult Strategy depends on what happens in local health authorities, local government commissioning agencies, local education and housing departments. So people have organized locally

1. to identify good practice and celebrate it
2. to put pressure on local bodies that are not yet meeting their legal commitments
3. to raise awareness and understanding of the problems that local adults with autism have to deal with.

One brilliant idea has been the travelling Push for Action Button. Nicknamed Jenson, after the eponymous formula one racing driver, it has toured the country, providing a focus for local campaigners and helping to bring campaigners together from around the country. I saw this at first hand when Jenson came to Barrow-in-Furness. Furness NAS had already been busy signing up supporters and also has links with the local police going back to the launch of an autism alert card by Cumbria Constabulary in conjunction with the NAS. So when they knew that Jenson was coming they arranged for the news to be projected on the side of Furness House in the town’s main square from an upstairs window in the local police station. 

I heard about it in a tweet on Tuesday night while sharing a pint with Tom Madders, who leads the campaign team at the NAS and was in Barrow for a Push for Action event the following day. We headed over to the town centre and met up with Piers Wright, who had carried the Button over from Sunderland that evening.

 We made the most of this photo opportunity and then had another beer to discuss the campaign. I was impressed by the enthusiasm of Tom and Piers, following a punishing schedule around the country (Sunderland, Barrow, Carlisle, Liverpool, Birkenhead in three days was just this segment of the tour) They were impressed by the enthusiasm of the NAS members and branches around the country and the warm reception from other autism organizations like Sunderland’s Autism Research Unit and Autism in Mind who had turned out to welcome Jenson and add their weight to the campaign. And this local campaigning is having an effect. Areas where implementation of the strategy had been minimal or tokenistic are taking real steps forward now. One problem with the Strategy is that a lot of the backroom work has been done in many areas but up front, positive action and new services are yet to emerge. This is beginning to change as the campaign brings people together and pressure to bear on local authorities.

Forum 28 hosted Barrow’s Push for Action event. The Mayor turned up with local media in tow and over a hundred new people signed up for the campaign. I could not attend as I was teaching that day. But I was heartened when one of our parents arrived in school sporting her Push for Action T shirt. Jenson was supposed to visit the school as well. But he got a better offer from Border Television News. Another time perhaps.

Push for Action is a local campaign for local people that is having a national impact. Instead of the normal route of an advocacy organization like the NAS mobilizing its support to lobby government ministers and MPs, Push for Action has created genuine grassroots support for the campaign amongst people whose lives are not directly affected by autism. This popular support has a way of feeding into the political process that can be more effective than professional lobbying campaigns. As a result half of all MPs are aware of the campaign and over a third have come out in support. The government has agreed to a proper public consultation when it reviews the strategy next year. Local authorities are to be given stricter criteria for assessing compliance with the strategy. The government has agreed to collect local data on adults with autism for the first time and support the right to advocacy for vulnerable adults. Perhaps best of all, given that doctors in general practice are the gatekeepers and under new health service reforms, the commissioners for many services, The Royal College of General Practitioners has agreed to make autism a learning priority for GPs for the next three years.

So congratulations to Tom, Piers and Jenson. But most of all, thank you to all those people who give their time to build NAS branches and all the other organizations and individuals who have come together around the campaign to guarantee a better future for autistic adults.

"I am here today to urge you not to forget people like my brother."

On Tuesday 15th October NAS ambassador Sam Mukherjee, accompanied by her brother Indi, spoke at our parliamentary reception for Push for Action. Read the full transcript of her moving speech, below.


"My name is Sam; I am a research psychologist and the proud sister of an amazing individual. My little (big!) brother is Indi, he is 18 and we are just about managing to keep our heads abreast. Indi was diagnosed with severe autism and learning difficulties at 2.5 years. We knew something was askew when he didn't reach his childhood milestones, he was reticent and found it extremely difficult to engage with everyone around him. I can only imagine how isolated he must have felt. The diagnosis was the first step towards the right direction for Indi as well as the rest of the family. However, it's an ongoing battle.

"Indi uses very simple Makaton (which is a sign language), gestures, pictures and has a limited vocabulary to communicate how he feels. He navigates society and its social structure via a series of simple and finite guides, timetables and social stories. The world is incredibly difficult to orientate himself to and hence exceedingly difficult to navigate. He is an incredibly polite, loving, astute, caring and emotionally aware individual. But the rigid thinking structures, limited social skills and communication defer him from living what you and I would call a neurotypical life.

"It's been incredibly difficult to get the support he needs. We are in austere times and that has made it even harder to find support. Indi goes to a specialist school in his borough for children and young people with a learning disability. However, his SEN statement lasts until 19. Post 19 education is extremely difficult to navigate as placements are dependent on funding. There are very few specialist services available to help young people like my brother. He needs appropriate independent living or life skills. I want him to achieve his fullest - as much independence and self sufficiency as possible. If that means he can make his own cup of tea, without any prompts or verbal suggestions then that is fantastic.

"His extremely trusting nature and lack of communication skills make him incredibly vulnerable. And of course we are not the only family that has had to go through endless meetings to get even the most basic of supports. Last year was extremely turbulent as Indi went through and is still going through transition- that is moving from children's to adult services. We have just started respite for him - so he goes away twice a month for an overnight stay. That gives him and us a much needed reprieve. We have had to deal with school site movement- which led to a complete breakdown for Indi; lack of care or support providers and uncertainty about Indi retaining his school placement. So that's worrying about education, health and social services all at the same time.

"Don't get me wrong, we have moments of exceeding highs and triumphs but they are mixed with a continuing inertia of lows. Having access to adequate and much needed support services is a constant issue and a constant battle. Add to that Indi is whom we see to have substantial needs. I can only imagine how much more difficult it is for those on the moderate to mild scale on autism.

"Currently, efforts are being made to implement the strategy in my borough and I am trying to aid in that but in austere times when everyone is fighting for the same thing- which is essentially more support, I feel that those who are least vocal will get left behind. That means people like my brother who don't have a voice to begin with and are unable to highlight their plight. I am here today to urge you that please don't forget them. Please remember the vulnerable who need our support the most."